Well today I decided to face my problem. As any keen observer will have noticed, a lot of the entries on this blog are me having a good old whinge about personal circumstances, cunningly disguised as some wider point about disability or certain sorts of impairment. Today I am openly whinging. Well, not exactly whinging, as I am looking towards a solution.
My health has picked up a bit. I am shamefully ungrateful for this, not because I am not pleased to be better, but because it doesn’t feel very much better and it is not nearly better enough. But, for example, I have managed to sustain a lower dose of opiate painkiller for a couple of months now. I'm wondering if I can drop my NSAIDS completely. Bad days I need more pain-relief, but that’s okay. I am spending fewer days entirely in bed and just now, and by a slight majority, most days I’m not actually falling asleep during daylight hours.
It’s really not enough, I don’t know why, considering what a hard time I had last winter, I can’t appreciate being able to do a little bit of something everyday – sometimes quite a lot of something all considered. But I don’t. I am still immensely frustrated. I have no serenity whatsoever. I know I cope better than some people, because I have known some people who really truly collapse in on themselves. But I also know that other people have carrying far greater burdens than my own without complaint.
Anyway, with one thing or another (I am short of time, as you'll see), I have decided to be more proactive. I am seeing how much I can achieve with half an hour's activity to half an hour's rest. Rest being proper, silent, eyes closed, bed rest. Activity being anything at all, including listening to radio programmes, watching DVDs and other activities other people might consider entirely passive.
I know this isn't practical to sustain everyday, and only ten minutes into my first rest period today [...] came into the bedroom and started talking to me about what we're going to have for lunch, but this is what I am doing. Wish me luck.
And that's half an hour's worth so I'm back to bed. Goes quick, doesn't it?
By the way, having fiddled with my template, can everyone still read everything okay? I realise that some of my older posts have been rendered in some hideously huge font, but do let me know if anything has gone really weird.
CSS! It's all Greek to me.;-)
I can read it all just fine.
And being proactive sounds like an excellent plan - taking control of your day in the ways that you can. So good for you. And yuck blat spech on feeling poopy.
I should have tried that equal-time thing on Monday, when I was completely fried. So fried I didn't think of it until the next day. And I know what you mean about frustration with tiny bits of improvement---if there's going to be improvement, how about going whole hog? What's with the incremental stuff?? Definitely have been there. Loved the post about the fatigue of dealing with other people, too. All best, mp.
Good luck! And everything is looking fine. Arial is so easy to read and it looks good with your template.
And here I was waiting for a crockery-tossing rant! ;-)
when things get really crappy, i usually make a similar deal with myself about writing/work...some time on to some time off. i'll play around with the ratio until i stop feeling quite so bad, or more likely until i start feeling consitantly bad instead of it getting worse.
i often call myself lazy for doing it that way, until i think better of it and realize that the point of the rest is to make the activity possible. in other words...i hope this works out for you .
The matching of activity/rests in short periods is really tricky to get used to but results in feeling a lot better when you're having a rough time.
Of course for some things it doesn't work out, life doesn't fit into half-hour slots with a bed handy, and I advocate the idea that when you need to (and if you can, of course) it's also possible to be awake for three or even four hours at a stretch with only short breaks for meditation, before returning to the bedroom for a longer "proper" rest - although I wouldn't recommend doing that every day.
I also find that my days vary - sometimes I can go on a pattern of an hour's activity (that includes mental activity with breaks as I need it) per twenty minute's silent lie-down, sometimes it's exact matching, sometimes I can hardly move and even end up asking anyone who comes to see me to please go into the other room and play on my computer for twenty minutes because I need another nap before I can talk again.
You know though that you need to make clear to AJ what it is you're doing otherwise he won't be able to give you the support I'm sure he wants to. Maybe get him to make you a red/green light, "Talk" and "Don't Talk", perhaps?
Great to hear that your pain levels are decreasing.
Now remember - opiate painkillers just interfere with the brain's processing of pain signals - they do nothing to alter the original cause of the pain in most cases. Nor do they stay in the bloodstream for very long.
NSAIDs on the other hand damp down inflammation that is causing the pain. Therefore be slow and cautious as you reduce them - don't come off cold turkey and remember it takes days if not weeks to get them out of the system so that you can evaluate your progress without them.
Good luck and the Force be with you.
Well, your stuff is readable...
no problem there.
Good luck with that regime...a half an hour of rest with a half an hour of activity...I have good thoughts for it.
The equal periods of rest/activity is a great idea (AJ permitting!!), and I'm heartened to hear that pain levels have been more manageable. Take it slowly though (although you don't need anyone to tell you this).
PS Carl Haaisen rocks!!
Thanks for pointing the way to spoons theory and expanding. The text is good, it always helps when there is white space between the lines. Progress is frustrating when it is two steps forward, rather than the ten we really wanted, but glad there is some thing you can do that makes some difference.
Thanks everyone for your support!
It worked quite well yesterday. Mary's point about variation came true; in the morning half an hour's rest didn't feel like enough and in the afternoon I got bored with it and started cheating by reading a bit. In the evening AJ and I wanted to watch a film and didn't want to break that up, but then after that I went to bed so that didn't matter at all.
Wasn't a terribly productive day in any case, but I felt and feel much calmer because I'm not constantly trying to do things and constantly failing. Will keep on experimenting.
Thanks again for all your support. :-)
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